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Wednesday, May 28, 2014

Random Monday on Wednesday

Yeah, I'm a little off :) My mind is a jumble of thoughts and I can't seem to get anything straight so I'm turning this into one of my Random Mondays posts even if it is Wednesday today.

Little Man told me that he only eats on Wednesdays now. That should save some money on the grocery bill, right?

Princess will be done with school next week and I'm really looking forward to it. It'll be so nice to have her home and not have to get up early every morning (unless Little Dude or Star wake me up, of course). Right now, I'm up until 12:30-1:30 am with Little Dude, then up around 3 am for up to an hour and a half to feed him again, and then up for the day at 6:30 to get Princess ready for school. I've had three other newborns, but this is a level of exhaustion that I didn't know was possible. I actually fell asleep while pushing the stroller to the post office last week and many times, I'm so tired that my legs just give out and I have to hang onto something so I won't fall. Someone recently complained to me that she was tired because she has to get up for work at 7 am four days a week after staying up late the night before. This same person also told me that she was too tired and crabby to have any sympathy for anyone-this as we're dealing with unknowns and constant medical issues with our high-needs baby. I was already having one of those days where Little Dude was being very needy and I was stressing about medical bills and his medical problems and the way she said it pretty much sent me over the edge so I spent the next 45 minutes crying. But that's fine. I'm not looking for sympathy, I'm looking for understanding and support and it's become pretty clear in the last few months who can be supportive and who can't. Thankfully, most of my friends and family have been amazing and have done more to support us in so many ways than I could've ever asked for.

We're loving our new house. My mother-in-law and sister-in-law unpacked a lot of boxes and rearranged furniture for me while I was staying in the hospital with Little Dude so when I came home it felt like a home instead of a house filled with boxes and furniture.

My sister feeding Little Dude. We've found that, as long as he isn't crying too much, the bouncy seat is a good place to feed him as it puts him in the right position and we don't have to balance him and the tube and syringe at the same time. Plus, he loves the bouncing motion so that can calm him down if he gets restless.

Little Dude has good days and bad days. On a good day, he won't cry as much, will nap better, and will take more formula by mouth versus by g-tube. On a bad day, he'll cry all day and will refuse to eat anything by mouth. But, at least there are a few good days now and that's what's getting me through this right now. And as a bonus, we finally got him on our insurance! There was a problem with some paperwork and all of his medical claims were being denied which was a bit stressful for us.

Finally caught a smile on camera!

We're still waiting for a diagnosis for Little Dude. Some of the genetics testing that he's having done can take months to come back so we know it could be a while. In the meantime, his main issue is not eating and with the g-tube, we know we can help him get enough food now so we're focusing on that instead of the unknown. Last week, he was turning blue when he cried so I took him the ER where they did an extensive echo of his heart to be sure there wasn't something else going on besides the PFO heart murmur. His heart checked out and his lungs also looked clear on the x-ray so we didn't have to be admitted to the hospital this time. Little Dude has had problems breathing and has had a cough and constant wheezing since he caught a cold at 3 weeks old (which is what put him in the hospital the first time). Those issues recently got worse and we've had to do nebtreatments to help him breath. We'll be looking into that more next week when he has his next doctor's appointment.

A dear friend of mine sent Little Dude a personalized hospital gown for if he has to go back to the hospital. She's the founder of Gracie's Gowns, an organization that provides special personalized hospital gowns to children with chronic or life-threatening illnesses at no cost to the family. It's a wonderful organization that blesses many families and if you are able to, I encourage you to support it by sponsoring a gown for a child.

Little Dude with his gown from Gracie's Gowns

It's taken me almost 2 hours to write this post thanks to the many interruptions from the kiddos and since it's now time to feed Little Dude again, I better call it good enough, no matter how disjointed and poorly written it is :)

4 comments:

Happy to see an update from you. I've been thinking about your family and wondering how you were doing. Still continuing to pray for you and hoping life gets even just a little bit easier during the summer month. Maybe by the time Princess goes back to school, life will have calmed down for you.